Friday, August 10, 2007

Round Six...or seven...I've lost track

I got my biopsy results on Wednesday but waited until my appointment today to update, since I had no clue what the plan would be. The biopsy showed a return of the leukemia with 65% blasts in the marrow. Our prayer going in to today was that somehow God would "turn the heart of the king" and allow my doctor to be open to second transplant, since that is the only possible "cure" for me. He told me last week he would also contact MD Anderson in Houston to see if they had any clinical trials open to me. He presented that as an option today, but I really don't want to leave home and phase one trials are beyond a long shot, so we turned to the only other option, which is to do another round of chemo (previously mentioned clofarabine). I asked him if it would be possible to go in while I'm still hypocellular (i.e. white count and blasts down to zero) and do a transplant and he said yes. I was shocked, to be honest, and incredibly grateful that he is giving me a chance. At this point I'm pretty much labeled drug resistant, so there is no guarantee that blasts will be low enough at 14-day biopsy to qualify me for transplant, but it is a chance, and the last one I have, so we are taking it. I will be admitted on Tuesday at Barnes and begin clofarabine and high-dose Ara-C. It's a rough drug, and I still have pneumonia, so I am honestly scared going in. I don't know how many times I can survive treatment, and going into this sick and with the liver risks again is rough. I'm not entirely sure yet who my donor will be as we have an offer from Sloan-Kettering to do a higher level of matching with my siblings, but at this time it looks like my sister Lizzie will be my donor. She's 13, ready and willing, and I can't express how thankful I am for another chance at this.

I thought a lot today about each of my doctors and just felt so blessed to be surrounded by such a team. They have allowed me to fight this far, and aren't giving up on me. I don't know how to express my gratitude for their daily work. I think also every day of people like Dr. Thirman at U of Chicago who daily searches for a cure for my specific leukemia (MLL-ELL). I wonder each day if today is the day he'll find the cure, and quietly thank God for the dedication of people like him who are searching to beat this horrible disease.

I'll update again once I'm in the hospital. Thank you as always for your prayers.

71 comments:

I know you have no idea who I am but I read every update you post and think of you often! I am praying that God will cure you of this awful disease! I hope your husband and little one are doing well and I am praying for them, as well! Your will and determination and faith are an inspiration to me!

I live in West Texas and found your blog by accident several months ago. I have read your back entries in order to know your story. I can not imagine what you are going through as I have been spared such agony. I had breast cancer and 32 radiations, but that was 5 years ago. I pray that your doctors and God will come up with a cure for you soon so that you can live your life with some comfort and normalcy. I check on you often. Like the lady above, your determination and faith are awe inspiring.

BEAUTIFUL photo. 1000 words indeed. What a treasure!We pray daily for your doctors, nurses, and other caregivers too, Amy. What work they do. Many thanks for the updates. We'll add your sister to the prayer list and give thanks for miracles, small and large, already granted and yet to come.

Amy, it is incredible how your inner strength in Christ has increased proportionate to your unimaginable weakness right now. In prayer, we hold your weakening arms high that the sun may not set while there are yet battles that God will fight for you.

Amy, your inner strength shines in this photo! I pray you will have so many more wonderful photos with your son and sweet family...ones in which you are the picture of health! Is anything to hard for our God? Nothing...and so we'll just keep asking for everything!

Wow Amy, that picture is so beautiful with you smiling so radiantly while holding your pride and joy...Gary! He is just a little doll too. I started to cry when I saw your pic because of all you have been through and you are holding your precious little boy and all of it just overwhelmed me. You are so incredibly precious to the Lord and He will uphold you through this as you go into the hospital next week and continue on your healing journey.

Thank you so much for the picture and the update. I was smiling through thankful tears as I saw your beautiful smile and precious son. As I sit here typing and listening to "One Day at A Time".."just give me the strength every day to do what I have to do"...dearest Amy, my prayers are with you. You sweet brave sister-with His love...heather

Hi Amy,Lookin good there lady...boy how big Gary has gotten over the year since you left Arizona.

This morning I wondered if this was another Satan verses God challenge with you caught in the crosshairs like Job. If it is, and that's a big IF, then I believe you've passed the test. Your writings are amazing and your fight is astounding while being an inspiration to many people who you may never know on this blemished earth. So the next time I'm not feeling well or I do something stupid and hurt myself, I'll try hard to remember you and not whine nor complain.

Many weeks ago I prayed a prayer of thanks for all the doctors, nurses, specialists, caregivers, technicians, pharmacists, and administrators who manage your case. Their numbers must be close to a hundred by now and I admit I've forgotten to pray a prayer of thanks for them for sometime now.

My sincere desire is that God, in His infinite wisdom, would say, "Step aside and let me and my Son take over and I'll show you what we can do."

Meanwhile, we'll pray for all the great experts and good people who work for your cure and trust that God will be working through the next chemo drug, protect your body from the side effects of the drugs, and move you quickly to transplant and cure. I know dear sweet Lizzy, I was her first dance partner when she was just a baby, if you remember (She was easy to lead thirteen years ago). She'll be a good doner just as Daniel was.

May God hurl this disease to the depths of the pit never allowing it to invade your body again. This too is our prayer.Hang tough.Uncle Cliff and Aunt Karen

I am amazed at your incredible support system of not only medical staff but your family and friends. These people are prayer warriors and fighters and even though you may not have the strength or the fight in you some days, there are so many people out there fighting and praying for you.

I've been checking everyday since your last post to see how you are doing...thanks for sharing your picture...you look so beautiful and full of joy!I am and will be praying for you as you head into this next round.

What a beautiful photo. I don't really know you, but I can "feel" your beautiful spirit shining through. Will continue to pray for you - and I'm so happy your medical team is giving you this chance to keep fighting. Don't give up!

Like others have mentioned, I regularly read your posts and do not usually comment either. However, I just wanted to add my voice to those who will be praying for you. Your strength, which I know is a result of your relationship with the Lord, during this trial is, and has been, amazing. I will pray as you continue the fight.

Amy, your story is touching hearts all over the nation. You will never know how many people are praying for you, me included. You are an inspiration and a light in troubled times. God bless you and your family.

Amy,What a beautiful photo! It brought tears to my eyes! Your little boy has grown so big!I am thankful your doctors are letting you try another transplant and I am praying that it works! I will be praying as you are in the hospital next week. God is with you! Do not forget it! Remember, too, that there are sooo many upholding you in prayer!Love, Gina

This photo is so incredibly beautiful and speaks volumes. I continue to pray for God's intervention in your whole chemo/transplant process. I ask for His healing hands upon you and His grace within you. And, as always, His blessings around you.

My husband and I continue to pray for you. Thank you for the update. I just can't get over how beautiful you are in that picture. It just warms my heart seeing you and your little boy. For someone so sick, you are just glowing with beauty. Just another reminder of the Beautiful one you faithfully serve. God truly works through you in amazing ways!

Amy, I know you don't know me, but I have been reading your blog for a few months. I am praying that you will be able to get the transplant. From your entries I can tell you are an amazing person. I loved the picture of you and your son.

I happened upon your blog a few weeks back and since then you and your family have been in my thoughts and prayers daily. You are an inspiration to many and I am confident that God is working in ways that perhaps we don't understand but we will see his miricle. Keep living, loving and laughing.....

I am a complete "stranger" but a sister in Christ. I found your blog through another friend who is battling cancer. I wanted you to know I am praying for you here in Georgia. May His healing touch reach out to you and grant a miracle. Thank you for the light and courage you have shown - Cindy

I'm praying for miracles, for answered prayers and a cure. I want this stupid cancer to go away and you to get on a plane and meet me. I want to sit on my porch and talk to you and watch Gary run around our yard.

That is my dream. So you keep fighting and I'll keep praying. You have been so tough and so strong and I am proud of how you have dealt this far. Take care.

So excited to hear that you can have another transplant. You are most certaintly a fighter and I am thankful that you are here today with your son!!! The picture of you and Gary lifted my spirits so high and my prayers continue. With my loveApril Martin

Amy-I have checked everyday to see how you are doing. I am still praying and begging God for a miracle on your behalf. I am glad that you are getting a second chance. I will continue to bring you and your precious family before the throne daily.Lovingly,Shari

Amy, you are so BEAUTIFUL! Thank you for sharing your picture. I read about you on Kim's blog and check from time to time. When I visit I lift you and your family up to the Father and I am asking Him for a miracle! Keep holding on to Him and He will never fail you! Your son is adorable too! :o)

amy,like almost everyone today, i rarely comment because i live way out in southern california and we don't know one another...but i'm checking up on you every day, even if it means reading the same post for a week straight. thank you for your honesty and your courage. you are an incredible example to your beautiful son, and to all of us.

Amy, please know that I am crying out to the Lord on your behalf. I pray that He will walk with you every step of the way as you travel on this rocky road. I pray that you would know He is with you and hear our collective prayers rising to Heaven on your behalf. Together, with the Lord, you can do this! GOD BLESS YOU!

Just wanted you to know that our family will be praying hard for you as you go into this next chance for a transplant!! You are such a fighter and I really admire you!! Your son is just an angel and I love the picture you posted!

I cannot imagine how you feel both physically and mentally, but admire you so very much and ask God every day to ease your burden and your families. You are a brave young woman. I think so many people are praying for you and God is helping you with the knowledgeable doctors who tend and advise you. God bless you, Amy. You are always in our prayers.

"Dear Lord.....I come before you & pray for Amy...I have not met her on Earth or her family...but I feel the need to pray for this family & her.....I ask tonight that you be with her.....& give them the strength & wisdom they need to make the medical decisions before them. I ask that if it is YOUR will that you will make her body able to accept another transplant & that she wil be a candidate for such a procedure. Lord there is NOTHING impossible for YOU. With your breath....she can be healed.....& if it is YOUR will doors & treatments can be made available to this woman. I can not imagine the load she & her family is carrying & I thank you for the people who have been brought to their knees before YOU Lord on their behalf....& those who may have come to know YOU by their FAITH. This is bigger than me...bigger than this family...we are praying for a woman....a daughter.....a MOTHER....a wife....Lord....I lay this request at YOUR feet....& ask for Thy will to be done....grant this family peace & comfort through this valley.....& Let them feel YOUR presence. Amen".

Dear Ones, You continue to be in my prayers. Thank you for taking the time to post--you encourage ME! May YOU be encouraged by the many who love you and are praying for you, though we've never met. I'm asking our dear God to meet your every need with Himself. From Central Texas.

amy, this is my first time here. i feel so encouraged by the strength you've been showing in the midst of all these things happening to you.

Father, i lift up to you amy. you said in your word that by your stripes we are healed. nothing is impossible with you, God, and nothing is too hard for you to do. i ask of you, dear Jesus, heal my sister here. make her whole again. give her the strength she needs at this time. i pray that you will also strengthen her husband and little one. Father, i pray for wisdom for the doctors who're handling her case. may all the meds she's taking be an instrument for her healing. Father, you are a God of many chances. may you have compassion for amy and heal her, Lord God. we believe in your mighty works and your faithfulness. thank you, Father, for hearing our prayers. my you bless this family now and always. we love you, God. in Jesus' name i pray all these, amen.

Praying for you...your perseverance is inspiring and I pray the Lord will continue to give you strength. Glory to Him. He is faithful. Praying, praying and praying some more. Nos I can add praying for that Doc who is looking for a cure for you. All good things come from God...Lord, for the sake of your daughter and your name, let the cure be found. With care and prayers, Meg in VA

Amy,I am another reader who prays for you all the time, even though I rarely post a comment. I'm sure there are many more like me out there praying for you as well. I lit a candle at Mass for you this morning, and every Sunday our family lights a candle for you. If you haven't visted 'Especially Heather' yet, please go and read some of her posts. She's a young mother battling cancer and posts about her feelings and her faith. It is very uplifting and I'm sure you can relate to so many things Heather has to say. Here is her link: www.especiallyheather.com

Hang in there Amy, I know you are feeling so lousy with the pneumonia, which by itself would be bad enough. But to face all that you are facing and with such courage and faith is beautiful. You are an inspiration.

Timeline

August 2007 - Clofarabine & Cytarabine with possible second transplant

August 2007 - Intrathecal Methotrexate

June - July 2007 - FLAG w/ mylotarg

April 2007 - AML M4 MLL-ELL Diagnosis

March - June 2007: Experimental DLIs

March - June 2007: Decitabine 5/28

November 2006 - Allogeneic Stem Cell Transplant (brother)

September 2006 - Salvage Regimen - MEC

July 2006 - Reinduction - Cytarabine & Daunarubicin 5/2

July 2006 - Induction - Cytarabine & Daunarubicin 7/3

July 2, 2006 - AML M4 Diagnosis

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus' sake, so that the life of Jesus may also be manifested in our mortal flesh. So death is at work in us, but life in you. Since we have the same spirit of faith according to what has been written, 'I believed, and so I spoke,' we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God. So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. - 2 Corinthians 4:5-18